Hello from Boston, Massachusetts (or some say Baastin), home of the
Green Monster and Fenway Park (correct pronunciation" Pahk"). :)
My name is Kristin Delfeld and I've been a silent participant of this
Listserv since May '96. I thought today would be a good day to emerge
from under my computer and introduce myself and ask all of you for some
advice. But first....a brief introduction.
I am 29 years old and joined this Listserv in June because I had a hunch
my Dad had Parkinson's ("PD"). Unfortunately, my hunch was confirmed 4
weeks ago by my Dad's neurologist. Dad, by the way, is 68years old,
lives in Milwaukee, Wisconsin, is extremely active, loves his golf game
(and Mom and I of course:)), likes to walk, garden, swim, and travel (to
see me of course), is a retired Electrical Engineer from General Motors
(I mention in case there are other's GM'ers), and is *the most caring,
wonderful, dad anyone could have*. Can you tell I love him lots??
Dad's only symptom of PD is moderate tremor in his right hand, very
minor trembling of head, and occasional internal body shakes (that's how
Dad describes it). Dad was on 5 mg./day Eldepryl and now is on
10mg/day.. He is going to start seeing Dr. Nauseida, the PD Director
at St. Joseph PD Center in Milwaukee. His first appointment in next
Thursday and he is *very* excited! He's made up a bunch of questions,
many of which I gave him. FYI, I've been an internet fanatic,
researching PD from morning 'till night. I also attended a PD symposium
(7-28 Cambridge, MA) sponsored by the NPF. That was *very* interesting
and informative. I immediately called Dad to tell him everything!
Also, dad's read the Udall Bill and is going to send postcards (thxs. to
Barbara) and contact all the Wis. representatives (thxs. to Millie
Seaman for the info.) and also is going to call the *big* cheeses in
Washington to get this bill on to the floor for the vote. As you see,
Dad's not taking this diagnosis lightly and is determined to fight it
tooth and nail.
So that's it for my intro. Now, I'd like to get some info. from some of
you.
1. As Dad's primary symptom is tremor, what drugs or vitamins or
exercise or other "alternative" treatments have you found relieve
tremor? He'd rather not take another drug if there's an alternative
treatment that works. He thinks the tremor (which is most predominant
in his main hand), is affecting his golf game. I know when he gets
stressed or nervous about it, the shakes get worse. He recently got
stopped for speeding (first time in 5 years) and his hand shook so much
he couldn't write at all! He was freaked out by that.
2. I'm worried about his mental state, not really depression, but how
this diagnosis is affecting him inside? I've asked him if he's
depressed and he says no. I believe him but can't help but think he's
struggling inside. I would be if I was told I had an incurable,
progressive, dehibilitating disease. Do you have any advice for him?
How did you cope with your initial diagnosis? I do know he read some
info. on the late stages of PD and got *very bummed out*.
3. As a newly diagnosed person, what information or advice would you
give him, knowing all you know now about current and future research
efforts, drugs, NGF's, transplants, surgeries, etc.... He's read alot on
promising drugs, surgeries, and the like... but what info. do you think
he should know (either good or bad) to effectively plan for the future
and life w/PD?
4. To all of you out there who have experience with "alternative" forms
of PD treatments, what successes or failures have you had with various
therapies?
5. Lastly, (I can't promise this is my very last question forever as I
am a very curious person:)), what books or periodicals do you recommend
he read?
Thanks for bearing with me and my long introduction. I look forward to
your replys and to becoming a more frequent contributer.
Have a great day!
Kristin Delfeld ([log in to unmask])
